› Forums › General Melanoma Community › Is the Nivolumab working?
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- August 31, 2016 at 8:03 pm
Hi all
I am new to this group and so glad to have found it. Thank you to Melanoma Research Foundation for your initiative, as this journey is challenging in so many ways and it is good to be able to share and encourage.Paul, my husband, has stage 4 metastatic melanoma. It is in his liver, lungs, kidney's, stomach, spine and brain. He was given 3 months in 2014 and by the grace of God, he is still with us today.Paul is on Nivolumab at the moment and we know the side effects and what to expect but we can't seem to find out is, how do you know if it is working? We want to find someone who has been on this medication or who is still on this medication and find out from them, what their experience has been.Here is a little history:Paul had an operation in about 2004 where they cut out a melenoma from his back, after which he was on Interferon for a while. Every 6 months he had his check up and in Feb 2014, he was diagnosed with Metastatic Melanoma. He was put onto a trial called, Vemurafenib. Being a trial, CT scans were done and we could see the tumours shrinking.In Jan 2016, there were more tumours and the trial was delcared a failure.He then went onto Ipilimumab but only managed 2 treatments before they found the brain tumours – this had then failed too.Now he is on Nivolumab and we don't know if it is working. No CT scans have been done. He has lumps all over his body and 4 tumours that are visible on his chest and back. There are lumps showing themselves continuously. Paul get severe pain which lasts between 4-9 hours later – he says it comes suddenly and leaves suddenly. I have taken him to hospital with this pain and nothing helps. They gave him morphine and he could feel the morphine working in the body but it did nothing to the pain and then the pain just stopped.If there is anyone out there who is experiencing this or has researched – how to know if the drug is working (not side effects), I would so appreciate to hear from you.Strength to all those with melanoma and to their familyKind Regards
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- August 31, 2016 at 8:42 pm
Greetings Hubbards,
Yes, you have come to the right place. So much knowledge, experience and understanding here it truly is amazing. Now for your husband, I am going to take a guess here, but I suspect he is not being treated by a melanoma specialist. This is defined by an oncologist who ONLY treats melanoma patients, and most likely at a large research-oriented institution. This is non-negotiable. As for his history of progression, nothing here will surprise us. Vemurafenib is well-known to decrease tumor burden quickly, but the body also tends to work around it quickly as well. For me it was only three months after almost instantaneous tumor reduction. Success can be fleeting in this business. The Yervoy, after only 2 doses may have needed more time to work, and in-fact is well known to first cause tumor inflammation which lesser doctors confuse with progression. Nivlomab (Opdivo) generally has very few side-effects, and also needs some time to work. With pronounced sub-cutaneous tumors as his, he may also be a prime candidate for an FDA approved treatment known as T-Vec, which can be added concurrently with the Nivo. I am considering that right now. If your doctors do not meet the above mentioned criteria you must seek them out immediately. Best to you both in the battle.
Gary
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- August 31, 2016 at 8:42 pm
Greetings Hubbards,
Yes, you have come to the right place. So much knowledge, experience and understanding here it truly is amazing. Now for your husband, I am going to take a guess here, but I suspect he is not being treated by a melanoma specialist. This is defined by an oncologist who ONLY treats melanoma patients, and most likely at a large research-oriented institution. This is non-negotiable. As for his history of progression, nothing here will surprise us. Vemurafenib is well-known to decrease tumor burden quickly, but the body also tends to work around it quickly as well. For me it was only three months after almost instantaneous tumor reduction. Success can be fleeting in this business. The Yervoy, after only 2 doses may have needed more time to work, and in-fact is well known to first cause tumor inflammation which lesser doctors confuse with progression. Nivlomab (Opdivo) generally has very few side-effects, and also needs some time to work. With pronounced sub-cutaneous tumors as his, he may also be a prime candidate for an FDA approved treatment known as T-Vec, which can be added concurrently with the Nivo. I am considering that right now. If your doctors do not meet the above mentioned criteria you must seek them out immediately. Best to you both in the battle.
Gary
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- August 31, 2016 at 8:42 pm
Greetings Hubbards,
Yes, you have come to the right place. So much knowledge, experience and understanding here it truly is amazing. Now for your husband, I am going to take a guess here, but I suspect he is not being treated by a melanoma specialist. This is defined by an oncologist who ONLY treats melanoma patients, and most likely at a large research-oriented institution. This is non-negotiable. As for his history of progression, nothing here will surprise us. Vemurafenib is well-known to decrease tumor burden quickly, but the body also tends to work around it quickly as well. For me it was only three months after almost instantaneous tumor reduction. Success can be fleeting in this business. The Yervoy, after only 2 doses may have needed more time to work, and in-fact is well known to first cause tumor inflammation which lesser doctors confuse with progression. Nivlomab (Opdivo) generally has very few side-effects, and also needs some time to work. With pronounced sub-cutaneous tumors as his, he may also be a prime candidate for an FDA approved treatment known as T-Vec, which can be added concurrently with the Nivo. I am considering that right now. If your doctors do not meet the above mentioned criteria you must seek them out immediately. Best to you both in the battle.
Gary
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- September 1, 2016 at 7:22 am
Thank you Gary for your insight and thoughts. I will be sharing this with my hubby and see where we go to from here.
I am not sure if T-Vec is available in our country as yet but I am definately going to look into it. We don't have large research institutuions here but our oncologist is a specialist when it comes to melanoma and is responsible for a lot of the trials that take place here. We will see him on Monday so will ask about this drug.
Thanks again. Strength and all the best to you too
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- September 1, 2016 at 7:22 am
Thank you Gary for your insight and thoughts. I will be sharing this with my hubby and see where we go to from here.
I am not sure if T-Vec is available in our country as yet but I am definately going to look into it. We don't have large research institutuions here but our oncologist is a specialist when it comes to melanoma and is responsible for a lot of the trials that take place here. We will see him on Monday so will ask about this drug.
Thanks again. Strength and all the best to you too
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- September 1, 2016 at 7:22 am
Thank you Gary for your insight and thoughts. I will be sharing this with my hubby and see where we go to from here.
I am not sure if T-Vec is available in our country as yet but I am definately going to look into it. We don't have large research institutuions here but our oncologist is a specialist when it comes to melanoma and is responsible for a lot of the trials that take place here. We will see him on Monday so will ask about this drug.
Thanks again. Strength and all the best to you too
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- August 31, 2016 at 9:33 pm
He should be getting scans every 3 months. That is really the only way to know if tumors are shrinking. The subcutaneous ones he can feel under his skin are the only ones that he could feel for himself if they are shrinking. But, internally, frequent scans are neccessary during treatment to know how well a drug is working. Agree with above comment, he needs to be treated by a melanoma oncologist to get the best possible care out there.
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- August 31, 2016 at 9:33 pm
He should be getting scans every 3 months. That is really the only way to know if tumors are shrinking. The subcutaneous ones he can feel under his skin are the only ones that he could feel for himself if they are shrinking. But, internally, frequent scans are neccessary during treatment to know how well a drug is working. Agree with above comment, he needs to be treated by a melanoma oncologist to get the best possible care out there.
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- August 31, 2016 at 9:33 pm
He should be getting scans every 3 months. That is really the only way to know if tumors are shrinking. The subcutaneous ones he can feel under his skin are the only ones that he could feel for himself if they are shrinking. But, internally, frequent scans are neccessary during treatment to know how well a drug is working. Agree with above comment, he needs to be treated by a melanoma oncologist to get the best possible care out there.
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- September 1, 2016 at 5:24 am
Sorry you have to join us but welcome to the group. You’ll find a lot of support here. Agreed as above…the immunotherapies (ipi, nivo, pembro) take a while to work. My husband was on pembro (Keytruda) for a year. Initially it looked on scan like the melanoma was still progressing but given additional time, the progression stopped. He did not have reduction in the melanomas (liver, lungs) but it did keep it from progressing for a year.Good luck to you and your husband in your battle against this disease.
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- September 1, 2016 at 5:24 am
Sorry you have to join us but welcome to the group. You’ll find a lot of support here. Agreed as above…the immunotherapies (ipi, nivo, pembro) take a while to work. My husband was on pembro (Keytruda) for a year. Initially it looked on scan like the melanoma was still progressing but given additional time, the progression stopped. He did not have reduction in the melanomas (liver, lungs) but it did keep it from progressing for a year.Good luck to you and your husband in your battle against this disease.
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- September 1, 2016 at 5:24 am
Sorry you have to join us but welcome to the group. You’ll find a lot of support here. Agreed as above…the immunotherapies (ipi, nivo, pembro) take a while to work. My husband was on pembro (Keytruda) for a year. Initially it looked on scan like the melanoma was still progressing but given additional time, the progression stopped. He did not have reduction in the melanomas (liver, lungs) but it did keep it from progressing for a year.Good luck to you and your husband in your battle against this disease.
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- September 1, 2016 at 7:01 am
Were the brain mets treated? Why didn’t they do gamma knife radiation while he was on ipi?You need a specialist yesterday. Find one and check out getting ipi again with the radiation or radiation followed by Ketruda.
And get a second opinion. It’s a must.
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- September 1, 2016 at 7:01 am
Were the brain mets treated? Why didn’t they do gamma knife radiation while he was on ipi?You need a specialist yesterday. Find one and check out getting ipi again with the radiation or radiation followed by Ketruda.
And get a second opinion. It’s a must.
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- September 1, 2016 at 7:01 am
Were the brain mets treated? Why didn’t they do gamma knife radiation while he was on ipi?You need a specialist yesterday. Find one and check out getting ipi again with the radiation or radiation followed by Ketruda.
And get a second opinion. It’s a must.
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- September 1, 2016 at 2:22 pm
I was on Nivolumab from Oct 2015-March 2016. Had little side effects and worked well for a while. Several tumors had disappeared completely and 2 others got smaller. Unfortunately I have area in right maxillary that quit responding. Now I'm in a genetic study using a chemo called Palbociclib (has been approved for breast cancer but now trying it on melanoma). My experience with Nibolumab is that after infusion, the sites would seem to get a little bigger (had some subcutaneous tumors) and then after a few days I could feel that they were shrinking. Hope this helps and prayers for your family. This has definately been a fight but we can never give up!!
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- September 1, 2016 at 2:22 pm
I was on Nivolumab from Oct 2015-March 2016. Had little side effects and worked well for a while. Several tumors had disappeared completely and 2 others got smaller. Unfortunately I have area in right maxillary that quit responding. Now I'm in a genetic study using a chemo called Palbociclib (has been approved for breast cancer but now trying it on melanoma). My experience with Nibolumab is that after infusion, the sites would seem to get a little bigger (had some subcutaneous tumors) and then after a few days I could feel that they were shrinking. Hope this helps and prayers for your family. This has definately been a fight but we can never give up!!
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- September 1, 2016 at 2:22 pm
I was on Nivolumab from Oct 2015-March 2016. Had little side effects and worked well for a while. Several tumors had disappeared completely and 2 others got smaller. Unfortunately I have area in right maxillary that quit responding. Now I'm in a genetic study using a chemo called Palbociclib (has been approved for breast cancer but now trying it on melanoma). My experience with Nibolumab is that after infusion, the sites would seem to get a little bigger (had some subcutaneous tumors) and then after a few days I could feel that they were shrinking. Hope this helps and prayers for your family. This has definately been a fight but we can never give up!!
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